Does anyone know any famous people with neurofibromatosis?

Guest over a year ago

HI Jill and everyone else who has NF1 NF2 i to have neurofibromatosis i have lived with it for many years i also had problems at school there is one time i can remember going to the pool and people took rheir children out of the water because of my brown mark on my body i was only 7yrs old

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Guest over a year ago

Hi I also have NF1 on my left arm abd since ever I was mocked at school. Even nowadays people look down on me. I always wanted a movie or a tv show starring a NF1 person so I can relate.

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Guest over a year ago

I have a daughter that they just found out that have nf I can say if 1or 2 but am a single mom they day die 5 years ago I live I. The Bahamas a am trying to find a good doctor in the USA to deal with her can you give me some more information on this an what should I do

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Cheer27366199 over a year ago

It hard tell when tumors going show up but all u can do show the world u going over come it .Dr try tell u do this and that but all u can do is do what best for u

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Cheer27366199 over a year ago

Mark that is awesome abt the movies i wishpeople in this world want to know abt this and not. Judge u for what o your body did y tell people u had a illness before u did the movies just wondering

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Guest over a year ago

Look up Washington University School of Medicine in St. Louis. They have an NF clinic.

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Guest over a year ago

I was diagnosed at 6mo old. have NF. have had 5 nf related surgeries. was 14 when I had total left hip replaced and still have the original one. have multiple cysts all over body that look like huge mosquito bites. my daughter was diagnosed at 4mo old and so far has no visible symptom other than the café au lait spots and her left leg bows out from knee to ankle

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Guest over a year ago

Ik this post was over a year ago but here I go I have NF1 the thing that I have struggled most with is my low muscle tone, I have had surgery to remove a tumor in my leg and was in a wheelchair for a bit but surprisingly it was not related to NF1 it was just a freak Tumor that grow out of no wear but I never let anything stop me am an actress and have done one molding job I just when ever I can talk about and let her know that she should not let anything hold her back

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Guest over a year ago

I was diagnosed at age five and since I have had some issues that hit pretty hard. I have an aggressive form of NF and Schwannomatosis. I had tumors excised several times throughout my life and an amputation of my right leg at age 13. I recently had three tumors removed from my Ulna nerve on my right arm and ulna nerve decompression surgery. I am healing since that surgery on 11-11-2018. I am 45 now and I live a full life, went to college and am continuing my educational experience towards my degrees in Social and Behavioral Sciences. Tell your little sister to do everything the best she can even if NF is being an A-Hole. Stay #NFstrong.

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Guest over a year ago

Quasemoto i too have this im 62 have had several removed but got millions now ive been told.got dark spots on lungs .... Look ed up could be cancer.can i get help since birth defectt im tired living with this HELP.

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Guest over a year ago

Yo .I was also born with on right side face. Cool let's chat. I'm 24

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Guest over a year ago

Hi, I have NF 1 and I am 55.

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Guest over a year ago

I'm a 62 year old male didn't know I had it until I was 34 when my second son was diagnosis at a routine doctor's appointment at about six months old. I feel very fortunate that my son and I are pretty healthy. I have a bunch of fatty fibroids under my skin but my son who is now 28 show no signs so far. He goes for routine check ups and I am going for the first time this September 2022. I hope it brings hope to some people who are dealing with NF! or NF2. My older son was not born with NF if he was born with it I probably wouldn't have had a second child.

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